Wednesday, April 29, 2009

The great thing about clinically quiescent lupus is that I'm on very few medications. The bad thing about clinically quiescent lupus...is that I'm on very few medications!

What do I mean? For the majority of my eight + years with lupus, I've been on Zyrtec (and Zantac) to control angioedema - random swellings in my lips and eyelids. As my disease activity lessened (and I started taking better care of myself), my swellings decreased considerably, so my doctor and I decided to see how I would do sans the two medications. Thankfully - I did great! I haven't had any swellings at all - but now that it's allergy season, I'm missing my Zyrtec. I never realized that for all of those years, the drug was keeping allergy symptoms at bay. For the past three springs that I've been Zyrtec-free - I've either lost my voice (due to a scratchy throat), had itchy, watery eyes, or, like this year, had a runny nose and congestion.

I know I could go back on Zyrtec (since it's now sold over-the-counter), but you know what? I'm enjoying my slimmed-down list of medications. I've worked hard to reduce my prescriptions to the two that I'm on...so I think I'll tough it out for now.

However, depending on the pollen count over the next few weeks - I may change my mind. Check back with me in a month...and if I don't get back to you...it's because I'm probably at the drugstore buying my Zyrtec.

Friday, April 24, 2009

It's been awhile since I did a prescription post. So for those who have been anxiously awaiting the next entry...here you go! The medicine up for review: Plaquenil.

Hydroxychloroquine (brand name Plaquenil) is considered an antimalarial drug used to reduce inflammation in the treatment of Rheumatoid arthritis and lupus. It isn't clear how it works, but the drug is a disease-modifying drug (DMARD or disease-modifying anti-rheumatic drug) meaning that it's designed to decrease pain or swelling caused by the disease in question.

I've been on plaquenil for a total of about 3 1/2 years since my diagnosis. This latest run (from June 2007 to present) has been very successful, and side-effects have been non-existent. In addition, I've had little to no disease activity since I've been on it, and my present dosage is 400 mg (200mg twice a day). In fact, it's been so effective that it's one of only two prescriptions I'm on right now (5 mg maintenance dose of prednisone every other day being the other one.) I also take a baby aspirin and calcium supplements daily, and although my doctor just added a prescription for a vitamin D supplement...I don't count it, since it has no effect on my disease activity.

However, the last time I took plaquenil, I didn't have as much success, for two reasons:

One - after being on Plaquenil for about a year and a half (at a dosage of 600mg for the majority of the time), the drug started adversely affecting my eyes. I knew retinal changes were possible, but it was such an uncommon side-effect that none of my doctors nor I were worried. However, my eye doctor discovered a change in my eyes after 18 months and recommended I stop taking the drug immediately. Because the changes to the eye caused by Plaquenil are usually reversible, after less than six months of stopping the drug, my eyes returned to normal.

Two - even when I was on the drug, I still had some degree of disease activity AND I was on several other prescriptions at the time to keep away pain, swelling, etc. This first time around, I wasn't that thrilled with the drug...which was a bummer...because a lot of lupus patients swear by it.

Because I'd had such a so-so experience with the drug the first time around - I was nervous about making the switch from CellCept (what I consider my miracle drug - see my previous post for more info) to Plaquenil back in June of 2007. (CellCept isn't safe to use during pregnancy.) Much to my relief, the transition was seamless and I had absolutely no disease flare-up at all. (Note that my lifestyle was much more accommodating than it was the first time, and I know that made a big difference!) When I made the switch, my eye doctor felt that going back on the drug for a short period of time (pregnancy) would not be harmful to my eyes, and he was right. In fact. my eyes have not been affected in any way, so I'm sticking with plaquenil for now. It's a lot cheaper than CellCept - and my body is responding favorably. I guess you can consider me a convert.

Dosage: I started at 200mg, have been on as much as 600mg (when 400mg wasn't doing the trick), but have now had much success with my present dosage of 400mg.

Known Side Effects:

Side-effects that should be brought to your doctor's attention:allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue•change in vision•fever, infection•hearing loss or ringing•muscle weakness, tremor, or numbness•redness, blistering, peeling or loosening of the skin, including inside the mouth•seizures•unusual bleeding or bruising•unusually weak or tired

Side effects that typically don't require medical attention (but can be bothersome, nonetheless):change in coloration of the mouth or skin•dizziness•hair loss, lightening•headache•irritability, nervousness, nightmares•loss of appetite•stomach upset, diarrhea

Administering: This is an easy one - as it requires no special food or drink. It's simply recommended that you take it with water and at the same time everyday.

Limitations: It typically takes up to 2 months (and sometimes up to 6 months) to see the results of Plaquenil. I experienced pain relief right around the 6 week mark.

Also note that my pharmacy offers two different manufacturers of the drug - and I much prefer Mylan. The other manufacturer's pills leave a terrible taste in my mouth. Thankfully my pharmacist knows which one I prefer now!

Additionally, when I became pregnant, Plaquenil was not on the approved list for breast-feeding drugs. (Safe for pregnancy, if medically necessary, but not for nursing. I'll explain why in a future post.) However, during the course of my pregnancy, it was switched into the safe category. Guess those 9 months were necessary!

Another interesting note: When Johnny and I traveled to South Africa a few years ago, with plans to go to Kruger National Park where there is a malaria risk, we had to get prescriptions for anti-malaria drugs. I wasn't on plaquenil at the time, but I mentioned the fact that I'd taken it in the past - just in case there was a concern of a drug interaction with another anti malaria drug and my other medication. The nurse practitioner in my doctor's office recommended we go with Malarone, instead - guess it's known to have fewer side-effects.

For more information, check out the following article: 10 Things You Need to Know about Plaquenil.

Monday, April 20, 2009

And I thought Deirdre was cute! Check out these adorable pics - featuring Molly and Mary Kate, Emma and Liam (with Deirdre), and Rosie, all of Deirdre's first cousins. They're all growing quickly - and the little ones have changed a lot. Take a look:

And this one - well, cousins will be cousins.

Have any idea what these two are thinking?

Feeling particularly witty today?

Leave your caption for the photo in the comments section. The winning submission will be spotlighted in a future post on Despite Lupus.

Friday, April 17, 2009

This post is my attempt at a reality check. In Wednesday's post, I mentioned that I'm still having trouble with my nursing infection. It's a very annoying, painful experience, I can assure you, and yet I find that I'm trying to convince myself it's not that bad. Let me explain:

When I wrote Wednesday's post (on Tuesday night), I was pain-free. It felt like the infection was on its way out, and in the original version of the post, I wrote something like, "it sounds worse than it is..." Hah! I woke up Wednesday morning, fed sweet Deirdre (which went swimmingly), and even gave thought to the idea of continuing to breastfeed for another month or so (primarily because it's so stinkin' convenient.) However, when I crawled back into bed to get a little rest during her morning nap, the pain reemerged, so much so that I couldn't sleep. Hours later I was still feeling it, and by this point, I was crabby, tired, and in pain. Not a good combination. And you know what? It WAS as bad as it sounded.

I hate being in pain, especially when I can take steps not to bring it on (i.e. wean the little lady so that mastitis doesn't have a chance of reoccurring.) So, because I'm such an optimist (and I tend to overlook the bad and focus on the good), I'm going to make a quick list of why subjecting myself to pain is NOT a good thing:

When I'm in pain...1) I'm a crabmeister2) I can't sleep, so I'm left feeling very fatigued (and crabby - see #1)3) I have very little patience, and Johnny and Henry pay for it. (I'm usually able to keep my patience in check for little Deirdre, and Darwin does nothing to try my patience, but the other two get the brunt of my frustration)4) I'm not able to focus, so I'm not as productive, which makes me even more crabby. (Do you see a pattern emerging?)5) I'm not able to appreciate everyday activities, like taking a quick run or sipping a good cup of coffee. The experiences are overshadowed by the pain...

These reasons, of course, remind me why I try to keep lupus in check. I've spent way too much time fighting the disease (and being crabby, fatigued, impatient, and foggy) in the past to know that a lupus flare is something I don't want to experience anytime soon. Therefore - I need to keep doing what I'm doing to stay healthy - which includes making good decisions about nursing, etc.

Wednesday, April 15, 2009

For anyone who's counting, I'm now on my 6th round of antibiotics for mastitis. Over the course of 6 months of nursing, I developed an infection after 2 weeks (which warranted the 1st round of antibiotics), and then another bout at the 2-month mark (requiring a 2nd, 3rd and 4th round of antibiotics). This latest infection came at about the 5 1/2 month mark - and it's taken a 5th (and now a 6th) round of antibiotics. Guess my anatomy is just prone to infection. Lucky me!

I have to say that my primary care physician (who I just saw for this latest infection) has been refreshingly sympathetic. What a treat to deal with an accommodating doctor when you're hurting! In addition to the drugs, he recommended moist heat (hot shower, a warm wash cloth, etc.) to ease the pain. While I've read that a shower can really help, it just hasn't worked for me. Why not? Probably because the idea of letting hot water run over my hurting body reminds me too much of the nights I spent taking multiple showers, trying to ease the joint pain caused by lupus. I have an aversion to the ritual - and experience both a physical and emotional reaction to it. I mentioned this to the doctor - saying that I know it sounds crazy, but the hot shower thing just conjured up too bad memories for me. I expected him to dismiss what I was saying, but instead, he said he totally understood. In fact, he told me that his wife had terrible nausea with one of her pregnancies, and wore one of those nausea arm bands around her wrist to help. It didn't do much good (because she was still nauseous for almost 9 months), but to this day, she still can't wear a watch because it reminds her of the arm bands and that terrible nausea. Exactly! How wonderful to be understood!

Monday, April 13, 2009

In a previous post, I mentioned that during my pregnancy, Baby Deirdre (then Baby Bun) didn't hold back when it came to kicking in utero. Every day around 4pm, she would start practicing her dance moves - and now I know what she was up to! Here's the routine she must have been working on. Thanks to this Jungleroo Jumper our neighbor, Susan, kindly let us borrow, Deirdre is really perfecting her moves. She's right off the Riverdance stage, don't you think?

I'd originally planned to feature just the one video clip in today's post, but a few days after I took the first video of Deerdeepants...she started doing this new, slightly more vigorous dance routine...so I've decided to include it as well. Having a child reminds me how quickly life can change. All you have to do is wait 24 hours and they'll be doing something that they weren't doing the previous day. What a wonderful thing it is to witness such rapid (and adorable) development.

Notice, however, her indifference to her stage mother's encouragement at the end of this second video. I think she's saying, "Whatever, Mom. I've moved on to the bumblebee."

My doctor recently commented on this idea of change as a welcomed event, as it relates to chronic illness. After he read a few chapters of my book, he remarked that when it comes to having a chronic illness, it's understandable to fear that you might "feel like this forever." But the truth is, things always change. And as he puts it, "Knowing that we will not feel the same the next day or the next week is comforting. Our ability to change and put our happiness and the happiness of our loved ones as the core of our existence makes us happier and healthier people with our chronic disease, whatever that disease may be. " Well put, Dr. R!

Friday, April 10, 2009

THURSDAY, April 2 (HealthDay News) -- A gene on the X chromosome appears to be linked to lupus and might explain why women are much more likely to develop the disease than men, a new study suggests.

The gene IRAK1 may also hold a key to treating the disease. Tests by the researchers found that lupus-prone mice lacking the gene did not develop common disease symptoms such as kidney problems, production of autoimmune antibodies and white blood cell activation.

The findings were published in this week's online issue of the Proceedings of the National Academy of Sciences.

"The extensive involvement of IRAK1 in the regulation of the immune response renders its association with lupus a prime candidate for careful genetic and functional analysis," senior study author Chandra Mohan, a professor of internal medicine at the University of Texas Southwestern Medical Center at Dallas, said in a news release issued by the university.

Lupus causes a myriad of problems such as muscle pain, extreme fatigue and inflammation of the joints, skin, major organs and central nervous system. Females develop lupus 10 times more often than males, a fact researchers have theorized has to do with differences in hormones between the genders.

Future research is expected to compare the role of X-linked genes against hormonal differences in determining the likelihood of one gender being more prone to lupus.

"This first demonstration of an X chromosome gene as a disease susceptibility factor in human lupus raises the possibility that the gender difference in rates may in part be attributed to sex chromosome genes," Mohan said.

The international, multicultural genetic study found three variants of IRAK1 common in subjects whose developed lupus either as children or adults. The test on mice confirmed the link between lupus and IRAK, which previous genetic studies had suspected.

Wednesday, April 8, 2009

Here's one of the latest PSA's from the Ad Council and the U.S. Department of Health and Human Services' Office on Women's Health. The ad is part of their new national multimedia campaign to raise awareness about lupus.

And here's a great new video produced by the Lupus Foundation of America, Greater Washington Chapter called "Chasing Butterflies." Enjoy!

Monday, April 6, 2009

Check out what this dedicated father is doing for his daughter who has lupus. What a commitment to the cause!

Chris Paradysz’ website, Life Without Lupus, details his training efforts as he prepares to break the current 24-hour track record at the Valley Preferred Cycling Center near Allentown, Pennsylvania. The current record of 391.29 miles (629.72 kilometers) is held by Kurt Bond, of Orefield, PA.

Why is he doing this? Here’s how he puts it:

"I’ve been blogging my training since last summer, when I decided to try and break the record. I should tell you that up until that point I was just a normal dad with a few extra pounds who liked to ride his bike on the weekends. But my oldest daughter convinced me I needed to take on a big, new challenge. She’s in college now, but has been living with lupus since she was in grade school. It’s a terrible disease that had caused her immune system to go out of control, wreaking havoc on her entire body, causing long hospital stays, and a lot of scary sleepless nights for her mother and me.

But now that we’re out of the woods and Allie is off at school, I’ve decided it’s time to do something on behalf of the 1.5 million Americans who are bravely battling lupus each day. I know that no matter how much sweat, pain and suffering this attempt may cause me, it’s nothing compared to lupus. But perhaps in my quest, I can raise some money and awareness for an organization leading the fight for a cure."

Through the S.L.E. Lupus Foundation, Chris is doing just that. "I can only hope that my squeaky bike wheels get the grease. I believe that we’re just $1 away from a cure – even the smallest amount of money and support could put us over the top, and on the way to a life without lupus. That’s our hope; that is our goal.”

Check out his blog and feel free to donate to this worthy cause here!******

Note: While my dad might not yet have any world records to his name (other than having the honor of being The Best Dad Ever), I'm proud to say that a few years back, at the age of 62, my dad joined me (and Johnny, my sister, and brother-in-law) as we competed in the Dublin Marathon to raise money for the Arthritis Foundation. How exciting for me to walk alongside my Dad for almost 7 hours as we covered 26.2 miles of Irish sidewalk! What's more, Johnny, Katie and I could train together because we all live close by, but my dad had to train for 6 months on his own - walking the streets of my little home town of Greencastle, Indiana. My mom was there for support, of course - but kudos to Papa for showing his youngest daughter how much he cares!

Friday, April 3, 2009

Another tip for those visits to the doctor, taken from my book, Despite Lupus, due out this Spring. Tip #5 - "Doctors are Real People, too. "Feel free to check out the first few Listen Up, Doc! posts by clicking here: #1, #2, #3, and #4.

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Doctors are Real People, too.

Take a moment to consider how many different physicians you’ve seen since you were diagnosed with Lupus. Each has their own individual style and manner, don’t they? I’ve personally seen more than a dozen specialists since Lupus came into my life, each of whom have poked, prodded, and prescribed a little differently than the last. No two doctors are alike, and yet our hope (and maybe even expectation) is the same each time we visit: cure me and do it now. We turn to our medical team with eagerness and expectancy because we believe they can and will provide the solutions we need. It’s comforting to put such faith in the profession as a whole, but it’s important that we remember the individuality of each doctor. Consider how their distinctiveness might mesh with your own uniqueness as a patient. You have a subconscious expectation that the two will work in harmony. When they don’t, it can be off-putting and a little disheartening.

Instead of becoming discouraged, acknowledge that your relationship may need a little finessing in order to be successful. Managing people takes a great deal of patience, understanding, and skill, and that’s how you should approach the relationship with your medical professionals. Not in a controlling, autocratic manner, but with a level of tolerance and perceptiveness that will allow you to juggle personalities, behaviors, and agendas with proven effectiveness. Perhaps you’re concerned that by accepting other people’s personality quirks, you’ll be lowering your expectations for effective health care. That’s not the case at all. Acknowledging that people’s temperaments and personalities don’t always match allows you to stop blaming yourself (or your health care provider) for the incompatibility or futility you experience from your appointments. Having established that no one in particular is at fault, you can begin to objectively evaluate your care in order to ultimately improve it.

Just like you and me, your doctor is only human. He has strengths and weaknesses, assets and imperfections. He’s going to have good days and bad days, and because you see him as frequently as you do, you’re bound to catch him on one of each. Your doctor should conduct himself with the utmost professionalism (even on his worst day). But it’s unrealistic to expect him to overhaul his behavior simply to meet your own personal expectations. You may want more small talk and less business, a shoulder to cry on instead of a composed, unemotional handshake, or more supportive encouragement and less brutal honesty. Just because that’s what you want doesn’t mean your doctor is responsible for giving it to you. In fact, he may be incapable of relating to you in that way. If that is the case, you may need to learn to accept your doctor for his expertise and his failings, or switch doctors.

A friend of mine, Marjorie, was in the middle of an appointment when she discovered just what kind of boundaries her beloved, accomplished, competent doctor had. During the course of this particular appointment, her doctor delivered some very bad news, and Marjorie instantly broke down in tears, crying hysterically. Her doctor was visually uncomfortable during the outburst, and was almost rendered speechless. She didn’t reach out to console or comfort Marjorie, as if she was incapable of behaving normally in the presence of a sobbing, panicked patient. It was a side of her doctor that Marjorie had never seen before, and she was shocked. Once Marjorie calmed down and was relatively composed, the doctor resumed her formidable personality, communicating intelligently and astutely, with no sign of the stunted, inhibited traits she had just exhibited moments earlier. Marjorie concluded that while she certainly could have used some words of consolation during her outburst, her doctor was far too valuable to let this small, relatively workable issue get in the way of a successful relationship.

I, too, have learned to adjust to Dr. R’s occasional tendency to be insensitive and abrupt. I experience (and appreciate) his kind and caring traits much more often than his terse disposition. But some days, his crisp, undemonstrative nature is just the thing I need to keep my emotions in check. I remember a particular instance when, just 6 short months after I’d gotten married, Dr. R needed to make it clear that I avoid becoming pregnant for the benefit of my own personal well-being. As a newlywed, it was one of the most devastating things I’d ever been told. Of course, I wasn’t actively trying to get pregnant, nor was I planning on starting anytime soon. But the fact that Lupus was restricting me at all caused me to start tearing up. Thankfully, Dr. R didn’t make the situation into a big emotional production. He gently explained what the dangers were if I did become pregnant, letting me collect myself as he kept me focused on the facts. Though his face and tone of voice conveyed his consolation, it was his reserved nature that kept my tears at bay that day, preventing an unnecessary and needlessly traumatic break down.

Wednesday, April 1, 2009

Here you go - another reason dealing with others can be difficult when you're fighting a chronic illness:

3) Some people will not know how to react

Let's face it - some people will be better at dealing with your illness than others will. Some won’t know what to say or how to say it. Others may fail to say anything at all. In fact, the people whom you expect to understand the most may be failing to do so at all. Perhaps you’d like them to acknowledge that you’re sick in the first place, because from the way they’re acting, it seems like they don’t believe you really are. They may show very little concern for your situation, interacting with you as if nothing has changed. When they do ask about lupus, their inquiries sound like accusations. The questions they pose about your job, household chores, or social plans just seem like opportunities to point out your failings. You’re struggling enough as it is to make sense of your newly limited abilities. Doesn’t their intuition tell them to have the decency not to bring it up all the time? You’re not capable of tackling this alone, but if they continue to exacerbate the problem, you may have no choice. You spend as much time defending yourself as you do fighting off the effects of the disease. Can’t they see the detriment they’re causing? They don’t have any concept of the pain and misery you’re forced to live with each day and, therefore, appear to have no compassion.

While there are many communicative blunders that can occur in any relationship, the interjection of a third party, in this case a chronic illness, can all but stifle an otherwise normal encounter. It may be impossible for you to fathom the insensitivity or inconsideration that others have toward your bout with lupus. But it may be just as difficult for those around you to make sense of how you’re dealing with the disease or to figure out what they should be saying to you, if anything. Now it’s up to you to figure out how lupus has affected your relationship. You need to consider the new boundaries that have arisen in order to reopen the lines of communication that have closed.

"Life in general and good relationships with other human beings in particular don’t have to be difficult. In fact, if they are, maybe you need to reevaluate your approach."

During your exploration, you might find it necessary to make significant changes in the way you relate to people (and to whom you relate). You may need to establish a set of ground rules for yourself or for others in order to avoid certain conversations. Perhaps you need to separate yourself temporarily from those who are struggling to adapt to your new life with lupus. It may be advantageous for you both to take some time and space to get used to the changes that are occurring.

BUY THE BOOK

Sara Gorman

In 2001, I was diagnosed with systemic lupus, at the age of 26. I had been married less than 6 weeks and was at a highpoint in my career in television production. While I fought to keep hold of the life I'd known - demanding, yet fulfilling career, busy social life, packed vacation schedule - after four years of running my body into the ground, I realized I was fighting life, not living it. Thus, I downshifted almost every aspect of my life. I let go of my career and made it my number one priority to get myself back in good health. I'm proud to say that I've reached my goal, but work each day to maintain that healthy lifestyle. despite lupus. My book details the steps it took to reach that goal. A native of Indiana and graduate of the University of Notre Dame, I reside in Alexandria, Virginia with my husband, two young daughters, and pug dog.